How do you all explain memory loss

[gina19]

Does anyone have a good way of telling people about their poor memory. (I always found from personal experience, if you just say I forgot, you get some weird looks)

I just tell people that the scarecrow from the wizard of oz has more brains than me most of the time an that I need to go on the next trip to the Emerald city to ask for a brain

It gets a few laughs out of people and makes a serious issue easier to talk about..

 

[ehinOWHEN]

Oh the memory struggle
I live alone for now, so there are days I even forget to take my meds(on time). Until I got this new 'Helpilepsy' it has a reminder feature that reminds you when it’s time to take your meds or sometimes an hour or half an hour just before, depending on how you set it.
A few days days, I’m on top of it, juggling thoughts like a pro, remembering appointments, names, details, and I feel this rush, like I’m unstoppable! But most days? It’s like I’ve lost pieces of myself in a fog. Every memory slips away no matter how hard I try, leaving me frustrated and drained. It’s exhilarating when it’s good and utterly exhausting when it’s not… a whirlwind I’m constantly caught in.

 

[ehinOWHEN]

Most people don’t get it though. Some would say you don’t care enough to remember. They’d be like "what do you mean you forgot?, like how can you forget?" I keep saying it, time and time again. It’s just us, living with the condition that truly understand the daily struggle.

 

[CQ:)]

I find apart from when I had a seizure the main time I have issues with memory is when I’m really tired or stressed.

 

[CQ:)]

Oh the memory struggle
I live alone for now, so there are days I even forget to take my meds(on time). Until I got this new 'Helpilepsy' it has a reminder feature that reminds you when it’s time to take your meds or sometimes an hour or half an hour just before, depending on how you set it.
A few days days, I’m on top of it, juggling thoughts like a pro, remembering appointments, names, details, and I feel this rush, like I’m unstoppable! But most days? It’s like I’ve lost pieces of myself in a fog. Every memory slips away no matter how hard I try, leaving me frustrated and drained. It’s exhilarating when it’s good and utterly exhausting when it’s not… a whirlwind I’m constantly caught in.

I have an app on my phone that reminds me to take my meds at 8am and 7pm everyday.

I have another app on my phone which is a notebook but is also a shopping list and calendar
I use the note book for everything, the shopping list for anything I need at the shops and the calendar just for my epilepsy / mental health issues. I have this calendar color coded from seizure to type of headaches / migraines or if I had anxiety attack / was depressed. To when I saw neurologist and psychiatrist

My other appts are in my phone calendar. Some people might think it’s over kill but it helps me when I look back on it and getting info ready for my specialists appts

We use diaries at work which I have to get in the hang on using but my supervisor has also been teaching me to do reminders on my work email calendar.

 

[Sabbo]

Our meds are a major factor in memory loss/issues. Short term memory is affected the most. Topamax/Topiramate is often referred to as "Dopamax" because of the issues it causes. There are often times when I know what I want or need to say, but my brain & mouth can't connect. At other times, I can literally "see" what I'm trying to say in mind as if it's on a piece of paper, but still can't say it. These issues didn't end, but lessened a little when my neuro switched me from Topamax to Zonisamide.

 

[ehinOWHEN]

I find apart from when I had a seizure the main time I have issues with memory is when I’m really tired or stressed.

Oh I’m currently dealing with a lot in my personal life, so I’d say that’s the cause as well.

 

[ehinOWHEN]

I have an app on my phone that reminds me to take my meds at 8am and 7pm everyday.

I have another app on my phone which is a notebook but is also a shopping list and calendar
I use the note book for everything, the shopping list for anything I need at the shops and the calendar just for my epilepsy / mental health issues. I have this calendar color coded from seizure to type of headaches / migraines or if I had anxiety attack / was depressed. To when I saw neurologist and psychiatrist

My other appts are in my phone calendar. Some people might think it’s over kill but it helps me when I look back on it and getting info ready for my specialists appts

We use diaries at work which I have to get in the hang on using but my supervisor has also been teaching me to do reminders on my work email calendar.

The Helpilepsy app I use is all of these things in one place. It’s a great app, you should give it a try. I use an iPhone though. I don’t know if it’s available on android.

 

[Sabbo]

I've been on meds for so long now that remembering to take them isn't an issue--it's making sure that I have them all. Recently, since I've been receiving Xcopri from the manufacturer, it has thrown off my other medications' supply quantities. The company sends a 28-day supply, while all my other meds come in 90-day supplies from the pharmacy.

 

[CQ:)]

The Helpilepsy app I use is all of these things in one place. It’s a great app, you should give it a try. I use an iPhone though. I don’t know if it’s available on android.

I use medisafe as a med reminder
Have done for years

Has different voices as reminders, at the moment I have Dorri from finding nemo as a reminder on the app

 

[Porkette]

I've always told others about my epilepsy so they understand that I have memory loss. I also have told them
that when I had brain surgery to reduce my seizures they Dr. removed the right hippocampus where short term
memory is and that helps others realize why my memory isn't the greatest.
Wishing you only the best and May God Bless You,

Sue

 

[Sabbo]

I also am pretty upfront with people about my epilepsy & some of the side effects from the AEDs. It is especially helpful when I'm at large gatherings or even in other situations where I'm meeting people who I rarely see (a few times a year, max).

 

[valeriedl]

Your reminders sound almost like mine CQ. I've got a small calendar in my purse, one in my bedroom and a large one in the kitchen that has all appointments or anything else coming up on for the family. Notes get taped on the bathroom door for these things too when it gets closer to the time they are going to happen. I've got reminders on my phone set for for all these things and to take my meds and any. I've also got a notebook style calendar that I keep everything in and things that went on during the day.

One of the worst things I have is remembering words. The word is right there on the tip of my tongue but I just can't get it out. It's almost like I'm playing a word guessing game sometimes. I'll describe what it is until the person I'm talking to figures it out.

My memory itself is horrible. My boyfriend could take me to a fancy restaurant three different times and he could tell me it's the first time he's ever taken me there. Good chance I'd believe him.

 

[ehinOWHEN]

I've always told others about my epilepsy so they understand that I have memory loss. I also have told them
that when I had brain surgery to reduce my seizures they Dr. removed the right hippocampus where short term
memory is and that helps others realize why my memory isn't the greatest.
Wishing you only the best and May God Bless You,

Sue

Yeah that takes a lot of courage to share, and its a lot helpful to you and others living with the condition. Because it helps create awareness. Hopefully they are empathetic enough to understand.
Wishing you continued strength,
Owhen

 

[ehinOWHEN]

It sounds like you’ve built a really effective system to stay on top of everything despite the challenges, which is great. I can definitely relate to what you said about forgetting words—the brain fog is just a lot sometimes. Thankfully I have an app, Helpilepsy, it does help me manage my memory struggles a lot better, especially about reminders to take my meds. It’s great that you have a support system in your boyfriend .

 

[Sabbo]

Your reminders sound almost like mine CQ. I've got a small calendar in my purse, one in my bedroom and a large one in the kitchen that has all appointments or anything else coming up on for the family. Notes get taped on the bathroom door for these things too when it gets closer to the time they are going to happen. I've got reminders on my phone set for for all these things and to take my meds and any. I've also got a notebook style calendar that I keep everything in and things that went on during the day.

One of the worst things I have is remembering words. The word is right there on the tip of my tongue but I just can't get it out. It's almost like I'm playing a word guessing game sometimes. I'll describe what it is until the person I'm talking to figures it out.

My memory itself is horrible. My boyfriend could take me to a fancy restaurant three different times and he could tell me it's the first time he's ever taken me there. Good chance I'd believe him.

Like I mentioned before, short-term memory issues come with our AEDs, as far as I can tell. Word loss problems were a major issue for me while taking Topamax/Topiramate ("Dopamax"). Since I switched to Zonisamide, the word loss problems have lessened, but haven't ended. Short-term memory problems, however, have not improved. I still have times when I know what I what I want to say, but my brain & mouth can't connect, or I will literally be able to see what I want to say in my mind as if it's written on paper, but I'm unable to say it.

 

[ehinOWHEN]

Like I mentioned before, short-term memory issues come with our AEDs, as far as I can tell. Word loss problems were a major issue for me while taking Topamax/Topiramate ("Dopamax"). Since I switched to Zonisamide, the word loss problems have lessened, but haven't ended. Short-term memory problems, however, have not improved. I still have times when I know what I what I want to say, but my brain & mouth can't connect, or I will literally be able to see what I want to say in my mind as if it's written on paper, but I'm unable to say it.

Yes! This is literally me it can be so frustrating really. Its like the words are right there but it just won't come out. I haven't tried topamax or Zonisamide. I'll be texting my doctor right away to make an enquiry.
Thank you so much for opening up about this. It's so comforting(in a strange way) to know I'm not alone in this.

Owhen

 

[C0urt]

if thy dont ask, they do not get told. and i really dont ask for names unless they find it needed to tell me. can make sex interesting

 

[Sabbo]

One thing I have encountered regarding the memory and "word loss" issues is extremely annoying. When I try to explain or describe something (especially to my mom) she keeps trying to rush me. I have even told her about all of the problems these meds cause, but she always forgets. She also seems to forget that thanks to these meds it isn't easy for me to recall people (mostly her friends) that I barely meet. Those who I have seen since I was a child I easily remember/recognize & greet--it's her newer friends that are the issue.